Tag: spinal cord injury

  • Uncover the stronger part of yourself…

    Uncover the stronger part of yourself…

    Liz Ann Kurdrna, Pilates instructor, feels like her emotional recovery from a rock climbing injury is ongoing yet “knowing that I have to show up for someone else…by teaching…it helps. It helps you uncover the stronger part of yourself.”

    In this podcast episode, Liz Ann talks about her lifelong love of rock climbing as well as her participation in other outdoor activities such as swimming, snow skiing, and cycling. In Montana, where she’s lived for the past 20+ years, she teaches online and in-person Pilates. Liz Ann has competed in local Triathlon events with the Challenged Athletes Foundation.

    In this video Liz Ann demonstrates a few Pilates Breathwork exercises.

    To learn more about Liz Ann’s online classes, check her website. You can register for her Seated Pilates class sponsored by BORP.

  • “That is me; I still have my hands;” Positive Energy during a Pandemic

    That is me; I still have my hands, says the 4-year old girl after waking up in the hospital and being told by her mother that she had lost her legs. The little girl grew up to become Rumba with Tina. Tina Verduzco teaches a Saturday morning online dance class for BORP: Bay Area Outreach & Recreation Program.

    Tina and Cynthia
    Tina Verduzco, Cynthia Noonan & Freckle, Younger Tina

    Tina, along with several other online instructors, help this podcaster maintain positive energy and a healthy mind, body, and spirit during the shelter-in-place period.

    Cynthia Noonan, one of BORP’s Board of Directors, transitioned the in-person fitness studio in Berkeley, California to the virtual world where participants join in from across the United States and Mexico.

    You are invited to join this online community; check out the BORP class schedule as well as other accessible exercise program offerings including Dance For All Bodies and Wheelchair Dancers. If you just want to see what a BORP class looks like, here are a few recorded BORP classes.

  • Hear Ye, Hear Ye: People with Multiple Sclerosis, Spinal Cord Injury, Parkinson’s or Neuromuscular Disease

    Hear Ye, Hear Ye: People with Multiple Sclerosis, Spinal Cord Injury, Parkinson’s or Neuromuscular Disease

    If you, or someone you know, has a muscle or nerve condition such as Multiple Sclerosis, Spinal Cord Injury, Amputation, Osteoarthritis, Parkinson’s Disease, or a neuromuscular disease (i.e. myotonic dystrophy, SMA, Charcot Marie Tooth, Becker’s, ALS, etc.), here’s an opportunity to participate in a research study. No trips to a medical center or donation of muscle tissue required.

    The Department of Rehabilitation Medicine at the University of Washington Medical Center has a variety of studies with different criteria. For Factsheets produced by UW — after a study has concluded — check this website.

    Listen to an earlier podcast episode with a UW Department of Rehabilitation Medicine Research Study Coordinator about Resilience and Aging with a Disability.

    For additional information about research studies discussed in this episode:

    UW Community Health Study, Phone: 1-866-928-2114 Email: communityhealthstudy@uw.edu

    UW CALMS Study, Phone: 1-866-928-2114 Email: calms@uw.edu

  • What is Advocacy and how can I do it?

    What is Advocacy and how can I do it?

    Maybe you have a firm grasp on what Patient Advocacy is all about? This episode explores different ways people with disabilities, their allies, and their caregivers practice advocacy. Whether you’re searching for the best healthcare options, leading a support group, mentoring newbies, meeting with legislators, or using social media to get a message out — it’s all about advocacy.

    Nancy and her friends meet Senator Cory Booker at a national Parkinson’s Disease Advocacy Conference

    Nancy Husari, a retired college instructor with Parkinson’s disease, felt empowered by her advocacy experiences at California’s state capitol and in Washington, DC. Brook McCall, Grassroots Advocacy Manager for the United Spinal Association talks about her work. Marla Murasko, a Down Syndrome Mom Advocate, shares her advice and experience using social media platforms for advocacy. Nina G., comedian, professional speaker, storyteller, writer and educator, discusses how to be a disability ally.

    Loose Transcription

    Hello and welcome to our episode about Advocacy. I’ve been thinking about this topic for a few months and have asked previous podcast guests about it – how do they define advocacy and what actions do they take toward advocacy – because I believe advocacy can have multiple interpretations. There is no one correct answer. This episode didn’t gel for me until I heard about a friend who went to Washington, DC for an advocacy conference. More on that friend later.

    I admit that perhaps my first idea of advocacy included images of going to a state capitol or local offices for government officials, or legislators, and asking for something. Years ago, when I was on my city’s library board, I did just that with a group of library-loving citizens. It was informative but it didn’t jazz me. Perhaps I lack that type of advocacy in my DNA? Not that I question its importance but…I’ve found my inclination toward helping my fellow patients – my community – a more suitable endeavor.

    Just what is an Advocate? The dictionary definition says an advocate is someone who speaks or writes in favor of something…they recommend something publicly. My life as an advocate began when I assumed the role of support group facilitator. I began to learn more about neuromuscular disease and how it impacts others – patients with different conditions than mine, their caregivers and families. I listened to these stories and integrated them with my own story and experience and over the years have helped to create programs and opportunities to not just suit my needs and desires but perhaps others who may not have the energy or opportunity to advocate for themselves.

    It is my hope that through the stories of my four guests you’ll learn about advocacy efforts that may be suitable for you. Not everyone can go to Washington DC and speak with senators but perhaps you can write a letter, make a phone call, use social media, or cultivate a network of allies?

    The first guest is my friend, Nancy Husari. I know Nancy from my local community here in Alameda. We met at a yoga class years ago and she’s in my book club. Nancy is a recently retired community college instructor. I asked Nancy if she calls herself an artist and her response – in line with her whimsically dry sense of humor – is that she prefers being called a FLÂNEUSE. That’s F – L – A – N – E – U – S – E with a little thingy over the A. It’s French; I wasn’t familiar with the word. You can look it up. I thought she was referring to the nasal decongestant…but…no.

    Nancy was diagnosed with Parkinson’s disease nearly 5 years ago. She didn’t share the news with me until a year or so after her diagnosis. She was still working full-time and her public acknowledgement of the condition took time as I’m sure many of you are all familiar with this process. Here’s our conversation about advocacy.

    Nancy

    I’ve been political active since the Vietnam war. A big part was through my Union. Lobbying advocacy was with Headwaters Forest when they were cutting down the Redwood trees in 1995. Our union got involved in it. what happened we got involved; the main thing was to divest state retirement teacher’s funds from a corporation. The first time we had cross pollination between labor and environment. They were both being screwed. I ended up being the person to speak in southern California. I was quoted in the newspaper. I saw a small group of people can really make a difference. You don’t really have to know anything or be an expert. All you have to do is show up and try. Later that turned in…I saw how we got what we wanted there. When the opportunity came for me to get involved with Parkinson’s, it was a natural fit for me.

    I was too busy having Parkinson’s, working, and commuting. It’s a natural fit for me. What is advocacy? To me it takes political action into a specific realm with communication with our legislators…specific asks about policy. For me it means face-to-face meetings with staffers and legislatures. Advocacy does have all those meanings. My cat has small cell lymphoma and I am acting as his advocate. We all need an advocate to help us through the healthcare system. We’re doing it as a community.

    what was your engagement with the structure, Parkinson’s disease organizational structure? We’re really lucky in the east bay to have PD Active – it’s not political like Michael J. Fox is. PD Active has a good support group, has a lot of exercise classes, and getting into a mentoring system. So people who are newly diagnosed have someone to show them the ropes. I needed that. I put it together piecemeal for myself. I would say I started this before going to Washington DC, I unofficially act as a mentor. I tell them about the options, medications, support groups…I think I pretty much covered it. I believe people have to take that first step. Get a moving disorder specialist. I just paid for a third opinion. There’s no diagnosis for Parkinson’s; there’s no bio marker. Only get an autopsy. It’s connected to advocacy work. I talk to people about exercise because that’s really important with Parkinsons; it’s not just everyone should get exercise. It’s as important as the drugs. Also just being an example telling people when they are first diagnosed they’re going to be really upset. But for me it has gotten better. I’m still able to do what I want to do…but I used to be able to put on a backpack…long hike for me is 5 miles. It’s not the end of the world. That’s how I see my role as an unofficial mentor to people. It was called Parkinson’s Policy Forum and run through MJF Foundation. It was really a great experience. I got an email from…do you want to apply for the forum? I did not think I would be accepted. I didn’t know anyone that would write that letter. I mentioned that I did lobbying in Sacramento. I was accepted. It was well organized, speakers, they taught us general things…Cory Booker spoke about his father who had Parkinson’s. they told us the Dos and Don’ts. It was empowering to be in a room with hundreds of people who have the same disability that I have. Maybe some were in wheelchairs. You have on and off periods. When the meds wear off, you really feel it. I saw a group of dynamic people that you didn’t need to explain things to. It was uplifting, energizing. I like being around people with the same disability and are real go-getters, being the same people they were before.

    In an earlier podcast episode exploring how weather affects our health, I spoke with Brook McCall. Brook is the Grassroots Advocacy Manager for the organization United Spinal Association. During that conversation, I took the opportunity to ask Brook what advocacy means for her.

    Brook

    I am working with the United Spinal…it’s a relatively new program. A network. We have someone in most states. Point person for advocacy. Make connections with legislators, working relationships going forward. Advocacy is an awareness. It’s anything we’re doing to make people understand what we need for our unique lives. Making sure we have allies. People know…simple things out there to make our lives better. [what was your path to becoming a vocal advocate?] agreed! I’ve been amazed lately. For me it was a slower process. When I was in the hospital for my injury; it was the first time I was in a hospital. I learned about the insurance system. I was mind-boggled. I had family, resources. I empathize the same things are being navigated by people without the resources. I just ended up going back to school, I studied public health. How many more advocates are needed? You need to speak to the policy makers. I remember that conversation. Over the years I’ve been able to get more involved.

    Brook mentioned allies. The term, disability ally, also came up during my conversation with Nina G. Nina G. was featured in our previous episode, laughter is the best medicine, because Nina is a stand-up comic. But Nina wears many hats in addition to being a comedian – she is a professional speaker, storyteller, writer and educator. Nina, who grew up with a learning disability and is a stutterer, brings her humor to help people confront and understand disability culture, access, and empowerment. She is certainly an Advocate for the disabled community so I asked her to explain the term, disability ally.

    Nina

    What is a disability ally? I have two friends – Hope and Elizabeth – how to be an ally for someone who stutters. If you want to be an ally to someone with a disability, you ask how do you want me to help? a big part of it to look at yourself and why do I want to be an ally. Is it about me? Steve Danner is a little person. We went to Seattle we went to NBC stand up for diversity which neither of us advanced on; what I noticed when we were everywhere people started at him. They get stared at constantly. This was so friggin awful. I started to stare at the people who were staring at him. I’m making this about me. This is me being angry. We talked about it. we want to be an ally to different people, in different groups. I think it needs to come down to genuine places. A drunk comic said to me…Dave sat there and was annoyed for me. He explained it’s a brain thing and has nothing to do with you. that to me is being an ally and they can just take it because it’s a relationship they have.

    Each of these guests you’ve heard from has a disability. You don’t have to have a disability to advocate on behalf of people with disabilities. Like Nina described, there are disability allies. And there are also caregivers who make advocacy one of their goals. Marla Murasko is a Down Syndrome Mom Advocate and Inclusion Influencer. She uses social media as her main form of advocacy.

    Marla

    I started out with Facebook. That’s where my community was – mothers of children with Down’s syndrome. Social media is constantly changing. Instagram being visual; I need to share my message of inclusion, it’s easier for me to do it on Instagram. Drive people back to your blog. Instagram stories. Use it to bring real life to your blog. I’m connecting more and having more intimate relationships with families on Instagram. Businesses are drawn to it. I feel I need to be. I do Facebook Lives. The patient leader or advocate…

    I think LinkedIn can be vital to health advocates if they are looking to connect with companies, health industry leaders. Share stories on, may get organizations to collaborate with you. they may invite you to speak at events. Have a presence on LinkdedIn. I’m taking what I put on my blog I put it on LinkedIn.

    I’d love to hear from listeners about their advocacy experiences. Feel free to comment on the podcast notes for this episode on the Glass Half Full website. I’m sure we haven’t covered all the ways people can advocate for themselves or their loved ones.

    No matter how you choose to express yourself as an Advocate I think it means taking the next step from being alone with your condition or disability. Stepping outside yourself, perhaps outside your comfort zone. You may never aspire to visit your State Capitol to speak with legislators but don’t dismiss it as a possibility. Here are some final words from Nancy and they are definitely motivational…

    Nancy

    I would encourage anyone who knows and loves someone with a neurological disease to get involved with advocacy whether it’s just signing letters, staying informed. From my experience, it really works. The more personal the interaction is…an email is great…face to face…I’m getting a lot of bang for my democratic buck. They really do what people say. They’re open to the constituents. Pictures are good. …when you see the off periods, it’s really devastating

  • The Heat is On! How Weather Affects Our Health

    Hot weather affects the health of humans and animals
    Basset Hound with ears flapping in front of a fan

    High temperatures can exacerbate symptoms for someone with a chronic health condition. The best way to cope may be to seek refuge in an air-conditioned environment. If that proves to be difficult, you may learn about a few tools and resources from patient advocates, You’ll meet Kate Mitchell, from Boston, who has Rheumatoid Arthritis and POTS (Postural orthostatic tachycardia syndrome), Danny van Leeuwen, also in Boston, who has Multiple Sclerosis, and Brook McCall, in Portland, Oregon, who has a spinal cord injury. They share their experiences with weather — hot, cold, ice, snow, and pressure changes.

    7 Hot Tips to Beat the Heat

    1. Pre-cooling

    Check out the National Multiple Sclerosis Society website for information about pre-cooling techniques.

    2. Hydration

    Water’s great but so are some other beverages. The Ayurvedic tradition focuses on herbs, spices, and other plant-based remedies to cool you down. Check this magazine article for a few recipes. If you’re intrigued by Ayurveda, have you listened to last year’s podcast episode?

    3. Diet Modification

    Consider eating smaller, lighter meals. Here’s a list of hydrating foods.

    4. Clothing

    Check out this issue of the UC-Berkeley Wellness Newsletter for tips on appropriate clothing for hot weather.

    5. AC over Fans

    This is discussed in the link above.

    6. Yoga Poses

    Curl your tongue and breathe. To learn more about this cooling yoga pranayama and other cooling asanas, visit this webpage.

    7. Meditation

    Listen to this guided meditation to help you cool down…once you’re safe inside or in a shaded area.

    Additional resources: From Brain & Health magazine.

  • Essential Nutrient for Emotional, Physical & Spiritual Health: Vitamin N (Nature)

    What is Nature and how is it beneficial to our emotional, physical, and spiritual well-being? Bonnie Lewkowicz (Program Manager, Access Northern California) and Lori Gray (Adventures & Outings Program Coordinator) both work for the Bay Area Outreach & Recreation Program (BORP) organization in Berkeley, California.

    Bonnie, Lori, and Delroy share their love of nature in this podcast episode.

    Both women use wheelchairs and have years of experience navigating hiking trails and organizing outdoor adventures for people with physical and/or developmental disabilities. Joining them is middle school teacher, Delroy Thompson, in South Florida. Together they share how important nature is for them.

    Bonnie wrote A Wheelchair Rider’s Guide published by the Coastal Conservancy. Delroy, is a member of the Muscular Dystrophy Association National Community Advisory Committee, and wrote a children’s book, The Secret of the Elves in Helen, about an elf kingdom n the Blue Ridge Mountains.

    Not everyone is fortunate enough to attend BORP events but you can search for similar organizations in your area at the National Center on Health, Physical Activity and Disability (NCHPAD) website.
  • Everybody who is in a body can DANCE and move – it’s a right we all have

    Co-Founder of AXIS Dance Company

    International Dance Day is April 29th. Here in Northern California we have Bay Area Dance Week with all types of free dance classes and performances. As Judith Smith, co-founder of the physically integrated dance company, AXIS, says, “Everybody who is in a body can dance and move — it’s a right we all have.” And that is the message of this podcast episode.

    Years ago when I held my first dance marathon to raise money for the Muscular Dystrophy Association a banner hung with the slogan, “Dance for those who can’t”

    Fundraising event for MDA held in a mall in North Miami Beach, Florida ~ 1978

    and that sentiment couldn’t be further from the truth. The AXIS Dance Company has included artists with physical disabilities, commissioned award-winning choreographers and composers, toured 100+ cities, and appeared on Fox TV’s So You Think You Can Dance. Opportunities for adaptive dance exist from here — BORP’s World Dance for All — to North Carolina where Mindy Kim teaches chair dancing.

    Leia Cash, a lifelong dancer and educator, teaches adaptive dance classes at the Ed Roberts Campus in Berkeley, adults with Parkinson’s disease, and seniors at a residential facility.

     

  • Resilience & Aging with a Disability

    Resilience & Aging with a Disability

    Research findings from the Aging and the Quality of Life survey — conducted at University of Washington’s Rehabilitation Research & Training Center — report higher quality of life associated with a disabled person’s higher level of self-reported resilience.

    After listening to this episode, check out this Fact Sheet for more information about building your resilience. Additional resources for building resilience can be found at the Greater Good Science Center and the book, Bouncing Back: Rewiring Your Brain for Maximum Resilience and Well-Being by Linda Graham.

    If you’ve participated in research or clinical studies for your chronic health condition, please message me at our Facebook page.

    Transcript

    welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready welcome back well that’s for me it’s been three weeks since my last podcast episode and i have really missed it did you miss it too i hope so hey this process is good for me but i hope it’s also good for you i was out of town in the big apple so to speak attending the accessible yoga conference what a city i’m so glad i lived there when i was young and more able-bodied it’s not so much having mobility issues that prove difficult for navigating new york city there’s just so much stimuli the sights the sounds the smells all the people moving at a fast pace stairs everywhere small spaces to move through or live in oi one big oi okay back to the here and now this is the first of future episodes i hope to explore one’s participation research studies relevant to your health condition i’ve participated in several most are self-reported surveys that are either mailed to me or i take online and but self-report i mean i’m responding to questions about my behaviors feelings activities and no one is observing me it’s how i view myself this type of research is by far the easiest for most people you don’t have to leave your home i’ve also participated in research studies where i did leave my home over a period of four years i traveled across the country to rochester new york for three separate visits to a hospital clinic where not only did i fill out self-report surveys but i also had diagnostic procedures and even gave them a piece of me a piece of my leg muscle which they said was the size of a pencil eraser but i digress i won’t talk about the noise the machine made which captured my leg muscle i’ll save that for another time i’m going to focus on a different research study that i participated in since 2009 i’ve been involved in an annual self-report survey affiliated with the university of washington i’ve never met anyone affiliated with the research study and generally takes me less than an hour to complete the survey and i recall receiving a few newsletters over the years about the progress of the research well this past january i decided to contact one of the research study coordinators affiliated with the study to see if they were open to an interview and they were i spoke with amanda smith the research manager for rrtc that stands for rehabilitation research and training center this is a program funded by the national institute on disability independent living and rehabilitation research and that program is housed at the university of washington the state not dc amanda explained to me that the study i’ve been participating in for the last eight years is called aging and the quality of life survey it’s a longitudinal survey across the united states whose initial goals were to learn more about healthy and successful aging of people with disabilities and what that means as well as how people experience secondary conditions those secondary conditions secondary to their disability include pain fatigue and depression over time the study has received additional funding so the researchers have also sought to find out what barriers may exist for accessing health care and they also explored what role positive psychology has played and how people experience and manage their secondary conditions the birth of the positive psychology movement is said to have begun in 1998 it is the scientific study of human flourishing and an applied approach to optimal functioning so positive psychologists examine concepts such as happiness resilience as well as other strengths and virtues that enable individuals communities and organizations to thrive so let’s pause now and define or as researchers might say operationalize the term resilience resilience refers to the capacity to recover quickly from difficulties and balance back into shape research is affiliated with this aging and the quality of life survey at the university of washington asked people with disabilities to describe resilience and some of those comments were being buoyant rolling with or dancing with a disability taking things one day at a time while also planning for the future finding a new normal as life changes and i would say that description most resonates for me because i always feel like i’m acclimating to a new normal and when i say always um i don’t mean always i have repeated episodes of assessing what a new normal is um back to the list another uh response to what is resilience making the best of life with a disability and trusting that stressful times will pass like the weather but before we go too far into resilience let me tell you more about this study and how did they find me a men explained that they were most interested in people who were living with a disability that they had acquired earlier in life and had aged with the condition rather than aging into a disability such as osteoarthritis so it’s a notable distinction don’t you think aging with a condition but just regular aging and because you’re aging you’re more inclined to have certain disabilities such as osteoarthritis they selected four chronic conditions multiple sclerosis muscular dystrophy spinal cord injury and post polio the primary tool the researchers use to find people with muscular dystrophy is a registry at the university of rochester and i’m in that registry so i was interested to know how many people have been involved in the study and how the researchers decided to focus on certain areas such as secondary conditions so we had um 862 participants in our first survey and today we have 1518. however we did recruit some new folks into the survey when we got that new round of funding because we had initially you know folks consented to completing up to four surveys so then um we had to reconsent when we got the new grant um so i went ahead and looked and of the 1862 who completed the first survey we have 70 of those folks still participating so 1322 of them are still participating in the study is that a good sort of retention oh it is okay that’s great particularly i think for a study that um we had to reconsent so we couldn’t you know we couldn’t bug people and say hey but you completed you know this last one are you sure you don’t want to keep you know we kind of just invite them once and you know if they’d like to continue then they can we have about a 90 response rate each time point so for everyone that we send a survey to we get about 90 of them back which is pretty high and that may be due to our diligent reminder letters and reminder calls that we make i wonder if there are differences between different conditions because in my disease community myotonic dystrophy most people that i meet are so eager to participate in some type of research and especially something that is self-report just you know once a year is is very accessible yeah um and you know i know that we do get some comments that our surveys are quite lengthy um and i understand that a sentiment the primary reason i would say that that we lose folks is because of their passing um and that’s particularly true for our participants with post polio syndrome who tend to be older than the other groups of individuals and then the second reason i would say is just because we lose their contact information that they’ve either moved or gotten a new phone number and we’re not able to reach them again back in 2008 before we even did the first cycle of the survey or the first survey itself we ran some focus groups with you know folks who were living with these conditions and we asked them about what healthy aging meant to them what types of things would be important for us to look at what should we be asking and that’s that was one place where we came out of this real focus on secondary conditions and also about the importance of support so social support resilience ability to participate in valued activities so that really informed some of the questions that we asked in the subsequent surveys and then we did another round of focus groups when we got the second cycle so that would have been between the fourth and fifth survey and we asked again about this idea of healthy aging but we also asked about access to health care you know are there things that you’ve encountered and your healthcare experience that were a barrier to you you know like a scale at your doctor’s office that that is a wheelchair accessible things like that and then we drafted some access to healthcare questions based on the feedback and then went back to our our participants and asked a few of them to read them over you know are these appropriate are we missing anything uh things like that so we try and incorporate more qualitative pieces to our work when we can we also have an advisory board that includes folks from our from our projects the research is still ongoing with the seventh survey currently being processed the team will spend the next year evaluating the data and hopes their funding agency will sponsor another grant but there are tangible results and products available to the public i asked amanda about these you know researchers are using some of the data so it’s not as if it’s been held somewhere and you’re just waiting for an end date to start analyzing it what can you or other researchers glean from uh some of the work that’s been done already sure yeah so i think one of the primary themes that came out of the data from the first few years of the survey was really this focus on middle age we learned that for folks who were living with with a physical disability they tend to experience these secondary conditions like pain fatigue or depression most acutely during middle age and we found that participants who reported that these secondary conditions created just about as much trouble in their daily lives as the primary physical problems of their disability did so really this focus on a middle age we published a paper about chronic comorbid medical conditions so prevalence of things like cancer diabetes arthritis and we learned that our prevalence rates in our survey participants were slightly higher than that of the general population not a lot but slightly higher and that the age of onset was was a little bit younger than the general population and again it fell in between that middle aged middle age bracket so between 45 and 64. so so this this real focus on middle age was a big take home for us and you know a lot of the aging research that is out there is focused on people who are 65 and older well you know what about middle age so um so that was a big takeaway for us well i’ve often felt that that my i could characterize my condition to friends and family who don’t really understand it as imagine i’m 20 years older and yeah you know what would a 70 year old or plus be going through and just you know the moving slower the all the um as you call them secondary conditions that are sort of heightened at an age when my peers are not necessarily experiencing them so sure that’s a concept that we would call accelerated aging perhaps not such sobering news regarding comorbidities and accelerated aging where is the good news you ask remember i started this episode talking about resilience well i saved the best for last here amanda talks about a relationship between resilience and how people with disabilities experience their secondary conditions and we were interested in learning how resilience may be related to the ways that people experience their secondary conditions or their ability to to manage those secondary conditions as they get older i’ve had a couple podcast episodes where we do talk about resilience so that’s very interesting to have that term come up it’s it’s interesting to see the research sort of shift from you know how do we help people who are experiencing pain or fatigue to sort of this more positive focus on how do we help them build resilience how do we help them stay engaged in activities that are of value to them so i know i sent you a bunch of questions and i will get to all of them but some just pop up and i’m wondering what have you learned about resilience if anything yet yes so we’ve um we’ve published a few things about resilience i know you mentioned uh one of the charts that was included in a newsletter that we had sent out to our survey participants and that was done or that came from an analysis that we did with our survey data from the first year through the fourth year and we looked at how people reported resilience and also how they reported things that they were experiencing like pain or fatigue and also their satisfaction with their ability to participate in social activities and their physical functioning what we found was that resilience seemed to act as sort of a buffer if you will in the trajectory of those secondary conditions so people that reported higher levels of resilience at the first survey reported less of a change in things like pain over time so of those who had lower resilience reported their pain also getting much worse over the four years and those with higher resilience reported less of an increase if you will but we still don’t know uh is resilience or maybe we do know i’m not familiar with the research but is resilience something that you sort of garner in childhood and it’s stored away or is it something that people in their 40s 50s and 60s can build that i think is up for debate in the literature as a whole i i think that our researchers would argue that it’s a little bit of both um that some people you know start out with a little bit more resilience than others but that it’s certainly something that you can build and strengthen over time we produce a few different evidence-based fact sheets on different components of aging with disability and we just published one on resilience and ways that you can build resilience and so that’s available it’s free to download it’s on our website we it’s called how to bounce back okay and all of our fact sheets are written by one of our investigators or postdoctoral fellows and then reviewed by our researchers and then they go through a set of reviews with consumers so with folks who participate in our studies who are living with these conditions um we usually do at least three rounds of those on each fact sheet to get feedback on you know what’s useful what’s not is there anything we left out um what don’t you like things like that and then we do another round of revision revisions and then we publish them so we’re pretty proud of our fact sheets and i think people have found them to be pretty useful so certainly take a look we’ve got quite a few of them up on our website so how do these trickle down in healthcare workers hands throughout the country so we partner with a few different organizations to try and disseminate these as best we can certainly we don’t have a marketing budget to be able to get these out as widely as we would like but we do partner with the american association on health and disability and they promote our fact sheets for us we’ve also partnered with the national council on aging our funding agency helps to promote these for us as well and then we have you know our website and our social media accounts that we use to promote these kinds of products more good news there are organizations and books out there that can help you cultivate resilience the fact sheet which amanda talked about is linked to the podcast notes on the glass half full website i’ve also included links to the center for greater good a program affiliated with the university of california berkeley with articles and videos about resilience i invite you to check out these resources to help you build on the reservoir of resilience you already have i’m definitely working on that for myself take care and thanks again for listening thank you for listening to glass half full leslie invites you to leave a rating and review on itunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot dot online.online